Getting over the side effects

Yesterdays post was really a glossed over version of just how sick Jeannie was last night from the chemo. The good news was that she slept through most of it. The better news was that she not only slept but had much less queasiness when she woke up this morning. She drove herself across town for the three thousand dollar injection designed to reboot her white blood cell production, then hit Meijer for a few items, gassed up her vehicle, came home and did a couple loads of laundry and walked the dogs. In between she did catch a couple naps. But a remarkable rally from last night.

I’ve been writing all the entries. She’s reviewed them, suggested changes. But she’s left the writing to me. Last night she didn’t even feel good enough to look at the draft before I posted. She was greener than Kermit. Greener than money, than either of the peas in a pod. She was so green I was amazed she could sleep. Today she’s still talking about going to the Greek Festival this weekend. The last time we missed was about ten years ago. That was the Labor Day weekend I fell off our roof. No broth tonight. I grilled a couple pork chops. She made a tomato salad. And she tolerated it all quite well.

Like I said she’s left the lions share of the writing to me. But today she even wrote a few words:

I have never been particularly good at asking for help or accepting it even, really.  Lately you’re not giving me much choice.  It’s a strange feeling to be the focus of so much generosity.  I’m at a bit of a loss for words.  Thank You all from the bottom of my heart.

At the Greek Festival, I don’t foresee her doing shots of Ouzo. On the other hand she’s never done Ouzo at the Greek Festival so why start now? Opa!

The first chemo treatment

All in all the first day of chemo went about as well as an intravenous administration of a chemical stew possibly could. First they drew three vials of blood. Then the test results are reviewed by Jeannie’s oncologist, who gives thumbs up or thumbs down on proceeding plus makes any adjustments in the final prescription for the morning. If I haven’t said it before I’ll say it now I’m convinced Jeannie’s oncologist was a cheerleader earlier in life. Not necessarily a bad thing as you wouldn’t want a dour pessimist in your corner for this fight. Plus I was impressed by her remembering some non medical details from our first visit with her. I’m also impressed by how many staff members are upbeat considering they deal with cancer patients each day. On top of that the majority of patients are of good cheer. Our patient was on the quiet side, worrying about something foul that she’s never before experienced. Who can blame her?

So off to the infusion room where Beth took immediate charge of Jeannie’s case and did everything possible to reassure her and get her to feel at ease. She let me hang around until it was about time to administer the first of the two “medications”. She said Jeannie would be done in about an hour and twenty minutes. Make a note of that because I ran it through my medical translator which says add at least 15 minutes to each hour of a medical duration estimate. The first medication is administered slowly, 1 cc at a time and then drawn back to make sure it hasn’t actually burned the port. So I take off on a round of work related errands that I know will take over an hour and a half. As I’m half way across town and half way toward picking her up the phone rings and it’s Jeannie’s number. How are you I say. “Out front where are you”. Oops. What a man what a guy. Later I notice two texts from her that I missed. If Beth ran over her time estimate it might have been by five minutes. This won’t change my opinion of most medical time estimates. But I will pay more attention to Beth’s.

During the treatment Jeannie only experienced a runny nose and tingling scalp. At 1:30 she was bouncy and running off to work, far too much like the cheerleader oncologist and Beth the nurse. At just past four she was still sounding great. On my way home she called and said if I wanted to pick myself up something to eat I could pick what I wanted because she was just going to try some soup. She told me something interesting about chemo induced nausea earlier today. It has little to do with the stomach. It’s the brain reacting to the belief that the body’s been poisoned. She’s tolerated her broth well and has dozed off and on all evening. This stuff affects everyone differently. I guess we’ll find out what’s next when we get there and roll with the punches.

Wig Shopping Day

Today was wig shopping day. Or perhaps the tale of two wig shops. The good shop and the bad. I won't name the latter. No need to vilify an entire organization because of one woman’s lack of motivation or interest. But Jeannie's formerly mentioned but unidentified friend drove in from an hour away. And thank God she did. Hell, she saved Jeannie's day. At shop number one the woman plunked something on her head that made her think to herself I'm going to look like hell for the next year I can’t do this. After a few more half hearted uninterested efforts Jeannie's friend looked at the woman and said “could we at least get something that works with her skin color”? The woman said she might be able to order in something in the color and length Jeannie wanted. Jeannie tried to impress upon this halfwit that time was of the essence. Unimpressed with both the quality of the merchandise and service, they moved on.

Kim's Wig Shop on Sawmill Road has been there forever. Jeannie says it’s been there as long as she’s been in town. (We’ve both been here so long the only thing we DIDN’T do is grow up here) She also thought she’d never have occasion to visit. But they found Kim Lee, the owner, who listened, was kind, helpful and found what she wanted. Since we had plans for this evening, her friend turned around and drove all the way home. I say we owe her. Everyone would say we owe her one. She wouldn’t agree though. If she hadn’t been along Jeannie says she would have just melted down at the first shop. Or worse yet I would have been there, useless and clueless as a man could be in that situation. Sometimes you’re just the right friend at the right place at the right time. And if you’ve never experienced that feeling, well you’re just not trying hard enough. (If you experience it too much, well you’re trying too hard and should also reflect and reconsider).

We wrapped up our day with a relaxing massage at Open Sky on West Fifth Avenue. Those girls are incredible. It’s fortuitous that this had just happened to be previously scheduled for the day before Jeannie’s first chemo treatment. What a way to get rid of some unwanted and perfectly useless stress. Afterwards we swung by the house and picked up Tillie and Rose. We threw them in the back of the car and headed out for a quick late dinner. Otie’s in Old Hilliard has been there for years. We’ve been going there ever since we met. Otie sold out a few years ago and with his retirement Hilliard lost its unofficial historian of 40+ years. But the new owners have tried to keep his spirit of constant change and improvement while hanging onto some of the old tried and true. The patio is on something like its fourth version. And that we can hang there with our dogs means the world.

Tomorrow at dawn we’ll be back at the Zangmeister Center. The place got a rather unique endorsement the other day. Unsolicited a gentleman told Jeannie he’d been going there for about three years and “they’re pretty nice folks except for giving you rat poison”.

One recurring side effect from the start of all this is sleeplessness. When we hit the pillows we'll both drop right off. But then somewhere in the middle of the night one or both of us will wake up and have a hell of a time dozing back off. When we both sleep through the night it's almost cause for celebration in the morning. Today we were going to get up shortly before six. We had to be across town by 7:15 at the Zangmeister Center, where Jeannie's oncologist is based and where all sorts of lovely chemotherapy drugs will be administered. Today was a heart test, a meeting with a patient advocate and a thorough explanation of the chemo drugs and their side effects. Lists that were two pages long. Per drug. The nurse practitioner repeatedly counseled that not all of these things happen. One of the ironies of all these drugs is that up until now the strongest thing she's ever had to take has been the occasional antibiotic.

Anyway we naturally woke up around 3:30. When five o'clock rolled around and we were still awake Jeannie said she was just going to get up in about 15 minutes and leash up the dogs. Tillie and Rose thought this was a fabulous idea, since they weren't getting much sleep anyway thanks to their damn humans. The stillness of the pre dawn dog walk is good for clearing your head, since it's going to be re-cluttered by the onslaught just ahead.

The chemo drugs that will be administered have been around so long they're generics. Not a four dollar generic. No these are thousand dollar a dose generics. But still less than I expected. Insurance covers the lions share. Brian, the patient advocate, is also the advocate for the Zangmeister Center's bottom line and wanted to make sure we could cover our balance. By the same token he was insistent that we never consider skipping any treatments or medications because there's always money somewhere whether it's grants or foundations or other charities or what have you. Ironically the most expensive drug is given the day after each of the first four chemo sessions, to boost her white blood cells, which have been kicked in the butt by the chemo. This is a mere three thousand dollars per injection. But the manufacturer will cover a big chunk of what insurance doesn't. Or as I said they're making so damn much money off this one that they're giving rebates. She's also been given some anti nausea drugs. There was a lot of talk today about side effects including but not limited to nausea. Jeannie was given some anti nausea drugs to have at the ready. One has an interesting list of it's own side effects which includes, you guessed it, nausea (nobody could make this up). It also has a number of other helpful uses, including treatment of schizophrenia. 

One guaranteed side effect will be hair loss. Tomorrow afternoon Jeannie is going wig shopping with a friend who will remain nameless here but who got a head start on the cancer battles this spring. Like Jeannie she'd led a very healthy lifestyle, eats no fast foods or processed foods. Hell she's a vegetarian and they're two of the healthiest living people you'd ever want to know.

Me, I want the drugs they advertise on television, where you're laughing with your buddies at a ball game watching Joe Theisman run to the mens room. 

So the events leading up to the 15 minute surgical procedure go smoothly enough. Except everyone keeps asking the pre anesthesia questions, only to be informed it's a local. Oh, yup says so right here. This goes on right to the point where they're ready to wheel her into the OR. The nurse from OR complains to the pre op nurse that there's no anesthesiology release. Because it's a local. Oh, yup says so right here. In fact this continued when she came out of the OR in the instruction segment of our production and Jeannie was advised against driving a car or operating any heavy machinery for the next 24 hours. At that point you don't feel like arguing any more. So Jeannie swore she'd stay off all earth movers for at least a day.

The OR itself was ice cold and Jeannie strapped down turned nearly upside down and buried under a pile of warmed blankets. The surgeon was buried under lead because the procedure is done with x-ray equipment to properly place the device. When he was done Jeannie says he was soaked from being buried under the lead. One of the nurses remarked to her that she was amazing because she never even flinched. They also had to be thrilled because they weren't dealing with someone who was out cold but rather someone who could hop from table to table under her own power.

The patient information board in the waiting room seemed to actually be pretty much up to date. When it said patient 386709 was in recovery I figured I'd be getting a call soon. What I didn't expect was to see Dr Cripe walking my way when I turned my head. He said everything went fine come on I'll take you back to her and then said there was one problem she made me listen to country music. Seems he offered her a choice of any music she wanted and she said country, to which he said that's the one thing we don't have. I wonder if he had the words to Wagon Wheel going through his head the rest of the day. Anyway he tells us you'll be on your way in a minute just as soon as they get one more x-ray to check on proper placement. And remember, ice is your best friend. A recurring theme with this man. So we're almost ready to roll. Except that Grant is a Level 1 trauma center and they had not one but two trauma cases roll in just when the mobile x-ray unit was supposed to be coming our way. The audacity of these people getting badly injured and jumping to the front of the line. What's also mind blowing is that Grant is one of three Level 1 trauma centers in the city, and one of four when you add Nationwide Children's. They may be drawing from the region mind you. But that's a lot of people badly injured.

By the end of the day ass was dragging. But the woman who actually went through the 15 minute procedure still had energy and needed nothing more than some ice and an ibuprofen. Men. Good thing we're only not quite half the population. 

Can't a girl get a minute of peace and quiet? As soon as Ohio Health got Jeannie and her diagnosis in it's system the phone started ringing. Sometimes it was one of those appointment reminder calls. Or a follow up to "see how the appointment went". But all and all a deluge of calls. And always at the worst possible time. Just when she'd get the whole thing out of her head for a minute the phone would ring to remind her she has cancer. She quickly learned she was going to be screening them out with  caller id. Ohio Health et al. only have one number not the multiple numbers they'd like to have. If you're a friend and we don't answer chances are we're really not home. If you're from a health care conglomerate chances are you're going to voice mail.

Another interesting aspect was getting a message saying an appointment had been set, without prior consultation with the patient. This cause great consternation and impatience with the patient, who's taken a decided attitude that she's a person fitting cancer into her life rather than fitting her life into what others think it should be. Her years of experience in health care has also led her to answers that are inconvenient for others. This past Thursdays installation of an IV port is an example. They like to pretty much knock you out with a twilight sleep much like they did to women in labor back in the 50s, until women rebelled when they realized they'd given birth to a child they'd lugged around for nine months and couldn't remember a thing about the event. Jeannie knew this was a 15 minute surgical procedure that could be done with a local anesthetic. Nobody seemed to think this could be done with a local until they checked with the surgeon, who had no problem with it. Now the anesthesiology group that lost out on an easy paycheck, well they might have been another story. But what they don't know won't hurt them. Or maybe they just need to ice the pain.

The day of the procedure seemed to take more of a toll on me than the person who was actually on the operating table. We were up at four and had to be at Grant Medical Center by 5:30. The check in lady was quite pleasant. I did throw her for a loop though when she looked at me and said "and you are"? I simply responded "former boyfriend". The poor thing muttered "oh my", then started nervously shuffling whatever papers are at an otherwise electronic workstation not quite knowing what to say until i added "and then I married her and we've been together ever since". Oh, she says you must be John. Wow. Ohio Health's database has taken notice of the fact that Jeannie has a husband named John. And you were worried about the NSA reading emails and listening to phone calls.



Coming up in our next entry our first picture (perhaps). The fifteen minute surgical procedure that takes four hours. And the surgeon who's subjected to country music against his will.

So when did this all start? Well the short answer is last month and the long answer is way before the two of us ever met. Over the years any "routine" mammogram led to a second more extensive diagnostic image to take a closer look at a couple of spots. The result was always the same, nothing to worry about here. But suddenly this summer it grew, seemingly overnight. The concern was evident on her doctors face and a diagnostic mammogram was quickly ordered.

Neither of us expected her to get the results then and there so she went off to this alone. Of course right then and there the radiologist gave her the worst news possible. I felt terrible that she got this right between the eyes and was all alone. When she called me at work and told me my heart sank. At the same time though neither of us was really surprised. She was scheduled for a biopsy the following Friday and given all sorts of information as to how much pain she'd be in afterwards and how she'd have to plan for some downtime for recovery. But before her date with the biopsy needle there was to be a prior engagement with a "breast specialist".  Turns out breast specialist is a euphemism for surgeon.

We had an appointment with Doctor Mark Cripe on a Tuesday morning. I'd expected to meet an arrogant jerk with a god complex. I don't know why, other than I have run into a number of doctors over the years who are convinced they are the second coming with pictures of themselves walking on water back in pre school. (I must also admit this stereotype of mine is terribly unfair because I've also met so many who are all round incredible people). This guy I had to hate though because he wasn't going to tell us anything we wanted to hear. Jeannie had actually hoped to be seeing a female "breast specialist".  So there are now all kinds of preconceived strikes against him and though neither of us said it I'm thinking to myself that we'll be finding another "breast specialist" asap. A woman. Who can make this all better and relate to my wife and what she's going through. Not some cold hearted arrogant MAN.

So Mark Henry Cripe comes into the room and starts talking with us and doing an examination and reviewing the imaging that had been done to date. He's being compassionate and friendly and thorough. He offers to do the biopsy right now on the spot or offers to let Jeannie wait until the one scheduled for Friday, what ever she wants. He asks if I am to be present or would want to leave for the procedure, saying some guys get freaked out by the whole thing. Jeannie says she wants me there. I point out that while I despise needles (can't even look when they draw blood for a routine blood draw) on this particular occasion I won't feel a thing. So he gets his samples, tells her to ice the area that ice will be her best friend and leaves us with a couple of staff members who will schedule another appointment and some additional tests.

In the car driving home from the appointment we both admit to liking the guy. A lot. The audacity of the man. He's very likeable. Oh and the pain she'd been warned about by the other office. She says they really overstated it. And me? Never felt a thing.

Here it is. The first post on an adventure we never wanted nor expected to take. We'd never even thought of blogging. But now it seems to be the easiest and most efficient way to keep everyone posted. It's a blog for family and close friends. Since it's being posted on the Internet it's available for anyone to see. All I ask is that any comments be kept to encouragement. No stories about how well Aunt Bertha did or treatments that should be sought at a clinic in Juarez.

This summer Jeannie's birthday was spoiled by news she has cancer. No it didn't come on the exact day. In fact we both knew where this was all going. We tried to tell everyone we could in person but that didn't really work out. And now the first chemo treatment is less than a week away. Neighbors and co-workers still don't know. They will soon enough. And thus the blog. Because the poor girl can only take so many phone calls. Imagine having to tell the same story over and over. She'll need her strength. So I'll be the narrator. Lucky you.

The cancer is stage three. Not good. But it's not stage four. It's isolated. It hasn't metastasized. That is good. The treatment will be aggressive. She describes it be saying they'll poison her, mutilate her and then burn her. 16 weeks of chemo (every other week) to hopefully shrink the tumor, then a break to get some strength built up so they can do surgery, followed by weeks of radiation. I'm sure everyone is itching to sign up for that program.

Her attitude is great. Her sense of humor is very much intact. And it's already clear that a good attitude and a sense of humor are paramount in navigating this journey. Physically she's going into this in great shape. She's 127 pounds clothed and at 5" 7 1/2" it's a BMI to be envied. Her energy is fabulous. Her diet is beyond reproach. And those factors make the diagnosis all the harder to believe. It's all been very surreal to her because she feels so good.

The title I never liked pink? Well, pink is NOT her color. But it is a color that gets rammed down your throat with this diagnosis. And there's nothing likable about the diagnosis either.